Dr. Stephanie Kukora is a clinical lecturer in Neonatal-Perinatal Medicine at the University of Michigan Mott Children’s Hospital in Ann Arbor. She completed pediatric bioethics training through the Kansas City Children’s Hospital, under the instruction of Drs.
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Dr. Harris’ research examines issues at the intersection of clinical obstetrical and gynecological care and law, policy, politics, ethics, history, and sociology. She conducts interdisciplinary, mixed methods research on many issues along the reproductive justice continuum, including abortion, miscarriage, contraception, in vitro fertilization (IVF), infertility and birth, and racial, ethnic, and socioeconomic disparities in access to reproductive health resources.
Christian Vercler is a Clinical Associate Professor of Pediatric Plastic Surgery at the University of Michigan C.S. Mott Children’s Hospital. He is a service chief of the Clinical Ethics Service in the Center for Bioethics and Social Sciences in Medicine (CBSSM). Dr. Vercler has a special interest in ethics in surgery and he holds master's degrees in both Theology and Bioethics. He has a passion for teaching medical students and residents and has won teaching awards from Emory University Medical School, Harvard Medical School, and the University of Michigan.
Dr. Michele Gornick is a Research Investigator in the Department of Internal Medicine at the University of Michigan Medical School. Her background training is in cancer genetics, with a focus on using quantitative methods to better understand the genome. Dr. Gornick joined CBSSM to pursue her interest in translational medicine, specifically dealing with issues surrounding communicating genomic information to patients, physicians and other health care providers. She was a VA and CBSSM Postdoctoral Fellow, 2012-2015.
Beth A. Tarini is an Associate Professor of Pediatrics & Division Director of General Pediatrics and Adolescent Medicine at the University of Iowa. Before that, she was an Assistant Professor in the UM Department of Pediatrics and Communicable Diseases. She received her MD from Albert Einstein College of Medicine (2001) and a master's degree from the University of Washington (2006), where she was a Robert Wood Johnson Clinical Scholar. In addition to her clinical interest in preventative care, she pursues an active research program on issues of newborn screening and genetic testing.
The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address. Myra Christopher presented the Bishop Lecture with a talk entitled: "The Moral Imperative to Transform the Way Pain is Perceived, Judged and Treated".
Myra Christopher holds the Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics. Prior to December 2011, Ms.
Christopher was President and CEO of the Center for Practical Bioethics since its inception in 1984 through December 2011. From 1998-2003, Christopher also served as the national program officer of the Robert Wood Johnson Foundation’s National Program Office for State-based Initiatives to Improve End-of Life Care which was housed at the Center. These roles have allowed Christopher to continue her lifelong mission to improve care for those who are seriously ill and their families.
Since the late 1990s, Christopher has expanded the scope of her work to include the under treatment of chronic pain. She is currently the Director of the Pain Action Initiative: A National Strategy (PAINS) and serves as Chair of the PAINS Steering Committee. From 2010-2011 she served as a member of Pain Study Committee at the Institute of Medicine focused on the under-treatment of pain. In 2012 she was appointed by the Secretary of Health and Human Services, Kathleen Sibelius, to the Interagency Pain Research Coordinating Committee (IPRCC) at the National Institutes of Health. In that capacity, she also serves on the Oversight Committee for the National Pain Strategy Task Force.
The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Thursday, May 15, 2014 at the Vandenberg Meeting Hall (2nd floor), The Michigan League, 911 N. University Ave, Ann Arbor, MI 48109.
- Click here for an audio recording of the 2014 Bishop Lecture
Dr. Sarah T. Hawley is a Professor in the Division of General Medicine at the University of Michigan and a Research Investigator at the Ann Arbor VA Center of Excellence in Health Services Research & Development. She holds a PhD in health services research from the University of North Carolina and an MPH from Yale University Department of Public Health. Her primary research is in decision making related to cancer prevention and control, particularly among racial/ethnic minority and underserved populations.
Joel D. Howell is a Professor at the University of Michigan in the departments of Internal Medicine (Medical School), Health Management and Policy (School of Public Health), and History (College of Literature, Science, and the Arts), as well as the Victor C. Vaughan Professor of the History of Medicine. He received his M.D. at the University of Chicago, and stayed at that institution for his internship and residency in internal medicine. At the University of Pennsylvania, he was a Robert Wood Johnson Clinical Scholar, and received his Ph.D. in the History and Sociology of Science.
Could you cope and find happiness if you were living with paraplegia? Think about what it would be like to have paraplegia and to imagine the impact of this disability on your life. Although some aspects of your life will become more difficult, there are ways to make your daily life a little easier.
List something that would help you to adapt physically if you had paraplegia. (For example, if you lost your eyesight, you could learn Braille, and/or use a cane). Just as there are ways to help you to adapt physically to paraplegia, there are also ways to help handle the immediate and long-term emotional reactions. List a strategy that you would use to emotionally cope with having paraplegia.
Please think about the two most upsetting things about developing paraplegia. Do you think these two things would become more or less upsetting over time?
- More upsetting over time
- Less upsetting over time
- Equally upsetting over time
Please rate paraplegia on a scale from 0 to 100, where 0=quality of life as bad as death and 100=quality of life as good as perfect health.
How do your answers compare?
Those who were given the adaptation exercise rated paraplegia much higher, 62. That means considering adaption tends to have people look more favorably on paraplegia than they otherwise would. For most people, the adaptation exercise resulted in higher ratings. Let's take a closer look at the actual study and explore the importance of considering adaptation.
A discrepancy in perceptions of quality of life
When people first think about a disability, it might seem pretty catastrophic. At first glance, you might think that people living with paraplegia must be miserable. Patients who actually have paraplegia, however, report their quality of life to be significantly better than the public estimates that it would be. It appears, then, that there is a discrepancy between the self-rated quality of life of people with paraplegia, and healthy people's estimates of what their quality of life would be if they had this condition.
Why this discrepancy?
CBDSM director Peter Ubel teamed up with researchers Christopher Jepson and George Loewenstein to conduct a series of studies that aimed to explain why this discrepancy exists. Past research has suggested that patients do not overestimate their good mood, which led the researchers to hypothesize that, in fact, non-patients truly underestimate the quality of life experienced by people with disabilities. The researchers speculated about two explanations that could account for this underestimation. One possibility is that non-patients may be subject to a focusing illusion. That is, they might fail to appreciate that not all life domains or life events will be affected by the disability. Another possibility is that non-patients may be failing to consider adaptation, unable to realize how their feelings and their ability to cope will change over time.
In one study, each subject received one of several defocusing tasks in addition to rating paraplegia. For example, one of these tasks asked subjects to rate how much better or worse their life would be with regards to eight specific life events (e.g., visiting with friends). Another task asked subjects to think of five events that took up the largest amount of their time the preceding day and to rate how much better or worse these events would be if they had paraplegia. In a second study, subjects received one of several adaptation exercise in addition to rating paraplegia. One of these was similar to what you read on the previous page, although more extensive. Another had subjects consider their quality of life both 1 month and 5 years after developing paraplegia. In both studies, sujects rated paraplegia either before and after or only after completing an intervention.
The researchers found that none of the defocusing tasks had any effect on ratings of paraplegia. In fact, these tasks actually caused many participants to give lower ratings than they would have otherwise. All of the adaptation exercises, on the other hand, increased subjects' ratings of paraplegia. Taken together, these results support that the tendency of nonpatients to underestimate the quality of life associated with disabilities is not the result of a focusing illusion, but rather the result of failure to consider adaptation.
Read the article:
Disability and sunshine: Can predictions be improved by drawing attention to focusing illusions or emotional adaptation?
Ubel PA, Jepson C, Loewenstein G. American Journal of Psychiatry 2005;11:111-123.